Good MAC Doctor Recommendations

Posted by chinasmom @chinasmom, Apr 7, 2017

I have been searching for either an infectious disease doctor or a pulmonary doctor in the St .Louis Missouri area to treat MAC. It’s exhausting work. I currently have pulmonary doctor with a prescription pad and an infectious disease student.
Please help if you know of a good one.
Becky

Liked by ling123

@bonniewhite56

Hi. I’m new to the site and just secured an appointment at the Jacksonville location. Someone in my readings on here mentioned Dr. Leventhal. I actually asked to have a consult with him. If anyone on here saw him or anyone else they recommend to talk to I would appreciate your feedback. I’ve been diagnosed about a year ago and am going to Mayo for a 2nd opinion because I’m not confident with my current doctor. Thanks so so much for your input.

Bonnie

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BonnieWhite56……i know how shocking it is to have ones Dr get angry when told you want second opinion….. i was so upset , when this happened After i had gone to National Jewish Health with Dr Huitt …..I switched to a new pulmonologist locally. I no longer could trust the Dr who became upset.
Dr Huitt and other specialists,after no NTM grew to 3rd stage from 3 sputum cultures, and my CAT scan showed no signs of active infectio, said NOT to take the antibiotics but work on my GERD which was causing reflux of our local contaminated water into my lungs. Tdrell

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@bonniewhite56

Hi. I’m new to the site and just secured an appointment at the Jacksonville location. Someone in my readings on here mentioned Dr. Leventhal. I actually asked to have a consult with him. If anyone on here saw him or anyone else they recommend to talk to I would appreciate your feedback. I’ve been diagnosed about a year ago and am going to Mayo for a 2nd opinion because I’m not confident with my current doctor. Thanks so so much for your input.

Bonnie

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Hello Bonnie. I am so glad that you took the time to read from past threads. There is so much helpful information on this forum. If you learn anything that you have not seen here, I hope you will share it with us. This disease is so elusive and kind of new on the medical field’s radar that new things about it are constantly coming out. Would you feel comfortable sharing with us what your diagnosis is?

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@bonniewhite56

Hi. I’m new to the site and just secured an appointment at the Jacksonville location. Someone in my readings on here mentioned Dr. Leventhal. I actually asked to have a consult with him. If anyone on here saw him or anyone else they recommend to talk to I would appreciate your feedback. I’ve been diagnosed about a year ago and am going to Mayo for a 2nd opinion because I’m not confident with my current doctor. Thanks so so much for your input.

Bonnie

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Shocking and scary? @bonniewhite56, that just, excuse my verbology, pisses me off. Nothing more irritating, and dangerous, than bad doctors. Don’t get scared, get angry! That is unacceptably poor professional behavior, not to be tolerated.

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Some doctors just have too big an ego to think for their patients and not take it personally.

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@bonniewhite56

Hi. I’m new to the site and just secured an appointment at the Jacksonville location. Someone in my readings on here mentioned Dr. Leventhal. I actually asked to have a consult with him. If anyone on here saw him or anyone else they recommend to talk to I would appreciate your feedback. I’ve been diagnosed about a year ago and am going to Mayo for a 2nd opinion because I’m not confident with my current doctor. Thanks so so much for your input.

Bonnie

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@bonniewhite56, Bonnie, you hit the nail on the head “taking matters into your own hands’! As with any medical issues, YOU have to be your own best advocate. Do your due diligence. Research your illness and WHO would be the best to treat it.

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Have diagnosis of MAC and bronchiectasis. Need local doctor in Tampa area to help getting through episodes. Any recommendations??

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Hi @jengelage you may have noticed I moved your post to this existing thread on finding doctors in your location.

I wanted to highlight some information that @colleenyoung shared from other users @boomerexpert and @128128terry11t offered http://mayocl.in/2og8RBc
Boomer says:
“Use this link: https://www.ntminfo.org/patients/physician-referral-list”

Terry suggests:
“If you called Mayo or National Jewish, might they be willing to give you a name if there is no liability issue? When I went to National Jewish, they gave me names of experienced clinicians in my area.”

I also wanted to highlight what @windwalker said that you are your best advocate! Find the doctor who best fits your needs.

Hopefully this is helpful. Let us know who you find!

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Thanks for info.

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@jengelage

Have diagnosis of MAC and bronchiectasis. Need local doctor in Tampa area to help getting through episodes. Any recommendations??

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@jengelage Hello. I have a notebook at home with drs names in Tampa. I am out of town at the moment until next week. Try http://www.ntminfo.org to see a list of bonafide mac specialists. They are listed by state, then by area. Please get back to me if you still need help finding a dr.

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@windwalker

@bonniewhite56 Hello Bonnie and welcome to our forum! I
understand that you will be going to the Mayo Clinic in Jacksonville; and seeing
Dr. Leventhal? I am a patient of his and I just adore him. Since I have been
under his care, my quality of life has increased significantly. After many years
of misdiagnosis', I finally got proper care and treatment through him. Please
feel free to ask any questions (none are too small or stupid) or share your
illness experiences with us. This is a wonderful forum with a wealth of
information and support. I am glad you are being seen at Mayo. You will be in
very good hands. When is your appointment?  – Terri M.
 

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Hello and thank you for your help—-I need a pulmonologist in Grand Rapids Michigan.—I have Mac and Abscessus. Need ASAP—staying in Michigan for a while I am from Florida.

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@judyhodgern Vilma Drelichman, MD – Infectious Disease
22301 Foster Winter Drive, 2nd Floor, Suite 200
Southfield, MI 48075
Tel 248-552-0620

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@judyhodgern

Hello and thank you for your help—-I need a pulmonologist in Grand Rapids Michigan.—I have Mac and Abscessus. Need ASAP—staying in Michigan for a while I am from Florida.

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@judyhodgern Stephen Galens, MD – Pulmonary
Pulmonary & Critical Care Associates
44344 Dequindre Road, Suite 410
Sterling Heights, MI 48314
Tel 586-262-5100
50505 Schoenherr Road, Suite 340
Shelby Township, MI 48315
Tel 586-314-0080

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I am looking for a good MAC doctor in Milwaukee, WI. Thank you!

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@angiejohnson Hi there. This dr is registered on the NTMinfo site as a knowledgeable specialist in the field of Mac treatment. He is the only one listed for your state on that site, but that does not mean that he is the only one around. His office is an hour and 45 mins from you. You may want to look up drs near you online and read their bios. Sometimes, they will list what their area of expertise is. Try looking up local Infectious Disease drs and ask them if they can recommend a pulmonologist who is also good to work with, My experience in the past has been that not all pulmonologists are familiar with treating mac, so be sure to see an I.D. dr as well. Let me know what you out please. Anthony Zeimet, DO – Infectious Disease
Affinity Health System
1611 S. Madison Street
Appleton, WI 54915
Tel 920-730-549

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@windwalker Thank you! I did see this doctor on the NTM site. I am seeing a Pulmonologist familiar with MAC, but looking for a 2nd opinion on length of treatment. So I was thinking ID doc would be a good second opinion. I will check into this doctor. I’m just surprised there aren’t any listed in Milwaukee.

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